Symptoms Worsen When On Gluten Free Diet. Weird Huh?

[jordanfowl]

Hi all!

Long story short I have recently be diagnosed (early may, positive blood workup and scope). I have been on and off the gluten free diet since then. It has been a lot for me to adjust to but I have been more on the diet than off. Recently I have had a significant amount of nausea and violent stomach pain(mostly at night). I don't get as nauseous and the painful stomach aches when i do eat gluten it is only when i haven't eaten gluten in two to three weeks. Before my diagnosis I didn't have any gastrointestinal problems, never nauseous, no stomach pain, nothing. But now I am constantly burping, nauseous, and intense stomach pain. I would have never thought I had celiacs but I got tested because my sister got diagnosed about a year ago. I don't know what is going on and I need some advice or a similar story because everything I have read online is the complete opposite of my story (stomach pain and nausea WHEN ingesting gluten). I am just so confused and so frustrated because I try to follow the diet but all of the weird side affects are making me bed ridden and feeling awful. Help please!

Thanks

Jordan

[AzizaRivers]

Hi Jordan. First of all...I'm sorry you're feeling so sick. It really sucks, I know.

Many people experience a kind of "gluten withdrawal." I think this is especially common in people who were asymptomatic like yourself. If that's what it is, you just need to stick to the diet and it will go away.

Also, new celiacs are often lactose intolerant because of intestinal damage. Try cutting dairy out of your diet and see if that helps.

Have you explained all of this to your doctor? I'm sorry you're having such a hard time with the diet. Please try to stick to it despite that--in the long run, you will only keep building up damage if you continue to eat gluten.

[jordanfowl]

Hi Jordan. First of all...I'm sorry you're feeling so sick. It really sucks, I know.

Many people experience a kind of "gluten withdrawal." I think this is especially common in people who were asymptomatic like yourself. If that's what it is, you just need to stick to the diet and it will go away.

Also, new celiacs are often lactose intolerant because of intestinal damage. Try cutting dairy out of your diet and see if that helps.

Have you explained all of this to your doctor? I'm sorry you're having such a hard time with the diet. Please try to stick to it despite that--in the long run, you will only keep building up damage if you continue to eat gluten.

yes i have talked to my doctor and she doesnt seem like she is concerned with it if she calls back at all. I have a job and it just is impossible to get what needs to be done finished if i keep feeling like this. i know this is a long shot but is there anyway im not celiac and its a mistake? haha i know thats probably not the case but one can only home right?

[ChristiL]

I'm new here and new to Celiacs, but I've done a lot of reading and researching (still in the dx phase). From what I understand, when you go off gluten and your intestines start to heal and then you ingest it again your reaction may be worse than had you not gone off it at all. You may be completely off gluten for those 2 or 3 weeks and then are accidentally getting some? I've also read that some people, after going gluten free, discover they have other food intolerances (I have a casein allergy which causes pretty much the same symptoms as Celiacs plus sneezing attacks and sinus/congestion issues - trust me, I came here trying to NOT have a problem with gluten and was hoping everybody would prove that theory wrong - probably not going to happen LOL).

I'm sure somebody else with a lot more experience will be along to help you. I'm still doing a food journal, so maybe if you did that it would answer some questions.

[Skylark]

yes i have talked to my doctor and she doesnt seem like she is concerned with it if she calls back at all. I have a job and it just is impossible to get what needs to be done finished if i keep feeling like this. i know this is a long shot but is there anyway im not celiac and its a mistake? haha i know thats probably not the case but one can only home right?

Positive bloodwork and biopsy? Sorry, but it's celiac.

What are you eating that's different when you go gluten-free? Are you just taking gluten out of your diet or are you eating a bunch of the specialty gluten-free foods? You may have another intolerance kicking in to flours you've never had before like amaranth, teff, tapioca, or arrowroot. Some people don't handle xanthan gum well. Try eating your usual diet, but minus gluten, and not adding anything new or different.

Also, if you go gluten-free and things settle down, getting glutened can make you really ill. While eating gluten, your response to the "poison" is somewhat suppressed. Once you stop eating it for a while, your immune system goes back to normal and the reaction to traces of gluten can be quite strong.

[rosetapper23]

I agree with what everyone has said so far, but I wanted to emphasize that if you're eating gluten-free processed foods, you may be reacting to the xanthan gum or one of the other gums used instead of gluten. Lots of us get stomach pain, bloating, and gassiness. I agree that you should try to eat all natural foods until you feel better and then add in some gluten-free processed foods little by little.

[Hawthorn]

I went on a gluten challenge recently, and since coming off that my stomach has been very dodgy - acidic, painful and gassy.

What I've found helps with it is to eat smaller meals more often, and bland foods - fish, potatoes and vegetables such as carrot, cauliflower, broccoli (no onion, tomato or garlic since they make my tummy scream) fried food of any kind seems to be a no no at the moment too.

I did go through this on going gluten free initially and it DID pass. It took a while but it did.

I've also cut the caffeine and now drink chamomile tea and water, which really helps.

I also cannot tolerate lactose...I bloat with it and get heartburn, but am fine with lacto free milk products.

Maybe it would be an idea to try something like this until your stomach settles down a bit, see if it helps. It's no fun having stomach problems

[GFinDC]

There is a very wide range of symptoms that people get with celiac disease. That is one reason it is hard or slow to be diagnosed usually. Doctors get confused and don't test for it because they are looking for something else that more commonly fits the symptoms. You can search on "celiac related condition" or "celiac associated condition" to find lists of other auto-immune disease that people with celiac are more prone to develop than people without celiac. At least you will have a better idea what you are risking then by not sticking to the gluten-free diet. Not a criticism, just an attempt to educate. This gluten-free diet is a big big change for some people (including me 3.5 years ago) and takes some adjusting. But you can do it and you can learn to eat differently and more healthily. It's just that healthy eating for us is gluten-free.

Your body may act differently from mine when you consume gluten, but that does not mean you are ok. Some people have no symptoms at all and are called silent celiacs. Others get DH (dermatitis herpetiformis) and mild GI symptoms. others get other symptoms.

Stick with the diet and try to be very very strict with it. Mistakes are common at the beginning IMHO, but the fewer you make the better are you are. Lots of us here do gluten-free every day. You will get used to it after a while and find it is easyier.